I am beginning a new thread, because there have been several inquiries regarding maintaining medical insurance after a diagnosis of Celiac Disease.

Please contribute your situation or professional information.

Thanks!

As I understand the Affordable Care Act, if the Supreme Court upholds some or part of it in June, insurance companies will not be allowed to exclude people with pre-existing conditions. Currently, the way insurance companies make money is by only insuring healthy people. Under the ACA, the mandate will require everyone to buy coverage, or pay a maximum penalty of $665, which will be deducted from a tax return. You cannot be jailed for not paying the fine, no can any liens or wage garnishments be levied upon you, so the mandate is actually pretty weak. The provision was made thus to ensure the insurance companies cooperation, one argument in favor of single-payer, medicare for all type health care.

Although one might expect this to be a huge giveaway to insurance companies, the growth in health care spending in the U.S. has slowed. This can be explained partially by the recession (no employer based health insurance), but also by new models of cost sharing with employees, and more encouragingly, by new global payments systems.

Global payment systems work by focusing on health outcomes rather than fee for service. It focuses on preventive medicine, and standardizing costs between hospitals for large bills like imaging and surgeries. For celiac and gluten sensitive patients, who need consistent testing over their lifetimes, this will result in huge cost savings to the individual, the employer, the government, and the insurance company.

In Massachusetts specifically where I live, everyone HAS to have insurance by state law, and there are high risk pool exchanges for those with pre-existing conditions. Those with low incomes are subsidized, and you pay on a sliding scale according to your income. The goal as I understand it is basically to have people pay 10% or less of their income for health insurance. The ACA is modeled off the Massachusetts system.

ETA: The Diane Rehm Show had a great hour long discussion about the near future of the healthcare system. You can listen to it at

My problem is not insurance denial. It's a rate up. They will not reduce the rate unless there have been no symptoms for a year. But with 3 little children it's nearly impossible to avoid accidental exposure. It's frustrating because our health is great and we hardly spend any money on health care. We applied for a $12,000 deductible plan and they still rated us up 133%. It is more than I can bring myself to pay because we just don't use that much health care.

My problem is not insurance denial. It's a rate up. They will not reduce the rate unless there have been no symptoms for a year. But with 3 little children it's nearly impossible to avoid accidental exposure. It's frustrating because our health is great and we hardly spend any money on health care. We applied for a $12,000 deductible plan and they still rated us up 133%. It is more than I can bring myself to pay because we just don't use that much health care.

That sucks. It just leads to a heads I win, tails you lose situation with the insurance company. What you've done of course is take the option they wanted you take, and not bought their product because they've priced you out of the market. If you HAD, though, they could have claimed any minor claim was evidence of continuing disease process. Get a cold? Definitely celiac. Have headaches? Celiac. Sinus infection? Celiac again. Then they could have jacked up your rates again, where you most likely would have dropped out or they would have bilked you for even more money. Awful system.

Granted, you KNOW you have Celiac, and thus are probably taking care of yourself. But I personally would not want to go without monitoring for years at a time, not that it is in any way your fault.

We actually do not even have Celiac. Testing was negative and genetic testing showed gluten intolerance but no Celiac as well. But the insurance doesn't care. It's all the same to them. But no insurance doesn't mean we would go without monitoring anything. It was a high deductible so we planned to pay for routine care and minor problems with cash. (And honestly I wish more people would do that). I prefer it that way. My only worry with not having insurance is if something large and unpredictable were to come up. That's what insurance is supposed to be for.

Anyway, I would just say be careful how you fill out insurance applications. Be honest, but don't put every little symptom that may not be connected with the disease. I think that's what got us and now we have to go back and prove that they aren't related in order for them to even consider reducing the rate.

That sucks. It just leads to a heads I win, tails you lose situation with the insurance company. What you've done of course is take the option they wanted you take, and not bought their product because they've priced you out of the market. If you HAD, though, they could have claimed any minor claim was evidence of continuing disease process. Get a cold? Definitely celiac. Have headaches? Celiac. Sinus infection? Celiac again. Then they could have jacked up your rates again, where you most likely would have dropped out or they would have bilked you for even more money. Awful system.

Granted, you KNOW you have Celiac, and thus are probably taking care of yourself. But I personally would not want to go without monitoring for years at a time, not that it is in any way your fault.

We actually do not even have Celiac. Testing was negative and genetic testing showed gluten intolerance but no Celiac as well. But the insurance doesn't care. It's all the same to them. But no insurance doesn't mean we would go without monitoring anything. It was a high deductible so we planned to pay for routine care and minor problems with cash. (And honestly I wish more people would do that). I prefer it that way. My only worry with not having insurance is if something large and unpredictable were to come up. That's what insurance is supposed to be for.

Anyway, I would just say be careful how you fill out insurance applications. Be honest, but don't put every little symptom that may not be connected with the disease. I think that's what got us and now we have to go back and prove that they aren't related in order for them to even consider reducing the rate.

I work within the life insurance industry so not myself an expert on how health insurance is viewed by carrier underwriters. But there is someone with my firm who deals with this and I asked her about how gluten intolerance and celiac are viewed in her realm.

First, she suspected that your insurance is not a group plan because she said that individual plans are much more stringent in collection of information than the underwriting criteria for groups. But whether group or individual coverage, she agreed with me that you should be forthcoming on insurance applications about things that will pop up on MIB, the Medical Information Bureau, because chances are they will find out if you have divulged it prior. Otherwise you may have some explaining to do about why you did not divulge. Now, don't stop reading just yet!!!!

MIB sounds like something relating to James Bond, but it's actually a data exchange that insurers use to trade medical info back and forth. It's legal (part of the disclosure you signed on the application) and has been going on for a long time among life and health insurers. They all share info with each other. Here's how it works: You go to your doctor and divulge that you went to a neurologist because you were dizzy. This may pop up on MIB. Or you tell the doctor you have Celiac. Whether they tested you or not, they write a note in their file and this could certainly pop up on MIB, especially if you have divulged this on a prior insurance application. The carriers are rather tight with info on how MIB info is derived, and if there is anyone reading this who actually underwrites and is willing to share it would be great, but I'd be surprised.

I cannot counsel anyone on whether or not they should decide to withhold info from a doctor, I certainly wouldn't if a symptom could be life threatening, MIB or not. But here's the short of it in your case: If you have not divulged to a physician, or provided info on any application, that you were treated for symptoms of gluten intolerance for that year or any year, then it shouldn't "exist" in the eyes of the insurer. I was really astonished that you had been rated for an intolerance to gluten, and while that means the medical world may be taking notice of the importance of that disorder, it doesn't bode well for others who are undiagnosed Celiacs, like me, who are extremely intolerant. But if you have cross contamination issues and do not need medical intervention or consultation, then this will not be on MIB.

In the meantime I am wondering if you could request a review of the rate decision, given that you test negative for Celiac. I'm not sure how feasible that is for you but it may be worth a try. Or, if it is individual coverage, I am wondering if you could just shop around. The fact that you were rated for gluten intolerance sounds extreme to me, but again, I'm not directly related to the health insurance underwriters.